The difference between Hell and Hello

Written by Thomas van Driel, published Friday April 28th, 2017

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The fact that life can be hell is no news to the millions of people worldwide, who are suffering from Lyme Disease, its co-infections or its many, many misdiagnoses such as Alzheimer’s disease , Chronic Fatigue Syndrome, fibromyalgia, multiple sclerosis or arthritis. These people desperately want to get recognition for the disease. Why do they and what would it take to achieve that?

“Just because you didn’t put a name to something, it did not mean it wasn’t there.” Jodi Picoult

Why recognition is so important

Recognition embodies several things at once for Lyme patients and their advocacy groups. It’s useful to make a distinction between the different meanings. Otherwise an abstract word as such will mean nothing at all.

First and foremost, recognition would imply that if you’re ill, you are ill.

Huh? Yes, mysteriously and probably for the first time in history, with Lyme you are magically declared ‘cured’ after a few weeks of ineffective treatment – regardless of the fact that you are still blind, paralyzed, in pain and so on.

Now suddenly this is called ‘MUS’ (Medically Unexplained Symptoms) or ‘PTLSD’ (Post Treatment Lyme Disease Syndrome). Can you imagine having cancer for two weeks, but suddenly declared ‘cured’, while still having the same tumor? Yet now it’s called ‘Post Treatment Cancer Syndrome‘.

So, you end up being just as ill, having a meaningless diagnosis and three more problems.

Two of them are that you are now (legally as well as medically) regarded as a psychiatric patient. Thirdly, your insurance company will stop paying for any treatment that will do something about the original cause of your health issues: Lyme.

So far, we only covered the health, legal and financial aspects of recognition. Now we get to the social one. If your doctor cannot give you some serious-sounding name for a disease, but declares you ‘mental’ instead, be sure your social environment will be tempted to adopt that attitude. Doctors are still regarded as authorities in our society.

So apart from not being treated properly, being stuffed with antidepressants and going bankrupt because of bills you need to pay for Lyme treatment in private clinics – by doctors brave enough to face retribution by their peers and character assassination by the media for actually upholding their Oath – you also need to fight stereotypes of ‘being lazy’, ‘looking too good to be ill’ and deal with the fact you might even be suggested to become a whore.

Combined, the lack of these different meanings of recognition lead to an alarming number of suicides among Lyme patients. Just because of missing codes.

What codes?

Did you know that if you walk into your doctor’s office with – let’s say – a heart attack, sudden blindness, searing pains, paralysis or something equally severe, your doctor can access a worldwide body of knowledge about all existing diseases, their conditions, causes and possible treatments?

This impressive system uses codes, International Classification of Diseases (ICD) codes, for every illness and condition imaginable. Every ten years the World Health Organization revises them to improve the information your doctor has, based on the latest scientific research.

Wouldn’t you expect that if that heart condition can be related to Lyme, it would be in there? Nope, sorry. At least not until recently.

My friend Jenna Luché-Thayer is a former Senior Advisor to the United Nations, with over 30 years of global experience supporting the rights of the marginalized. She is the Founder of the Global Network on Institutional Discrimination and she determined that these missing codes were a source of much unnecessary suffering.

She then reached out to her global network and the Ad Hoc Committee for Health Equity in ICD11 Borreliosis Codes was formed. It included renowned scientists and doctors such as Dr. Horowitz, Dr. Liegner, Dr. Leona Gilbert, Dr. Judith Miklossy, Professor Perronne and many other internationally established experts from four continents.

The Ad Hoc Committee for ICD11 Health Equity

The goal of the Ad Hoc Committee is to help WHO update their codes, synchronized to the latest scientific references of Lyme infections, stages and its many conditions. The international group then undertook intensive research to inform the revisions of the codes.

Our research extended beyond medical and scientific concerns – we demonstrated how the missing or incomplete codes were a form institutional discrimination that contributed to a worldwide situation of preventable human misery.

I was honored to be able to contribute to this extra-ordinary project as a social researcher, highlighting the Human Rights side of the report. I provided Dutch cases regarding how parents who go to extraordinary measures to provide their sick children treatment are having their children taken from them and another case where a 29 year man suffering from late stage Lyme was told his insurance company would not cover his medical treatments but would cover his euthanasia.

The report ‘Updating ICD11 Borreliosis Diagnostic Codes’

The Ad Hoc Committee has provided WHO our comprehensive report to inform and shape the new diagnostic codes. WHO has thanked us for our research, and recognized our efforts and contributions.

Prior to our efforts the digital draft (Beta version) only included four of the hundreds of possible conditions caused by Lyme. They focused on the acute and early infection and did not acknowledge latent or chronic Lyme. Furthermore the ICD11 Beta version did not include transmission via flees and human pregnancy. Neither did it provide a structure that would not allow doctors to find the needed connections nor allow stakeholders to enter relevant information.

The current revision phase for the WHO’s ICD codes ended on March 31,2017. On March 29th, we submitted a 103-page final report with over 260 references to A-status peer-reviewed scientific articles. We also entered all our proposals onto the digital Beta platform prior to March 30.

These proposals were supported by multiple peer reviewed publications and the conditions included:

Congenital Lyme infection

Persistent infection

Latent infection

Possible fatal conditions of the kidneys, liver, heart, lungs

Strokes and other vascular diseases

Dementia and other possibly fatal neurological condition

We also included a list of urgent suggestions for research into areas, which have not been properly investigated yet, such as transmission via blood transfusion, donor organs and sexual intercourse.

From hell to hello

Therefore doctors were actually – technically – right so far, when they told you that ‘Lyme does not exist’.

Or why doctors, who do care for their patients and who are willing to treat people longer than outdated guidelines indicate, for forms of Lyme that are complicated and persistent, are attacked by their governments and medical boards.

It is also why this will not happen anymore, once the WHO had updated their codes.

The word ‘hell’ is only one letter apart from ‘hello’. Any programmer will tell you that if the code for the letter ‘o’ is not written in your computer’s software, tapping it into the keyboard will not produce it on your screen.

Stakeholder input

We are confident that the WHO welcomes this stakeholder input to provide state of the art information to doctors all around the globe. As is their standard procedure with any other serious disease.

With properly updated ICD codes there will more accurate statistics of the Lyme epidemic. Based on these new statistics, new policies will be developed. With new policy, priority will be given to funding. With funding, international cooperation will be stimulated and proper research will be done into valid tests and effective treatment.

Because of new research, public health information will be accurate. Based on this information, legislation will be adjusted. With new legislation, insurance companies will be forced to cover your health costs. With coverage, better treatment is possible, regardless of income. With treatment, you will get your life back.

With medical and legal acknowledgement of Lyme as a serious worldwide epidemic with multiple conditions and multiple ways of transmission, finally proper measures can be taken to preserve public health. And to end the current institutionalized violation of basic human rights of far too many people.

In short: a paradigm shift that will change the current ‘hell’ for millions of people into ‘hello, Lyme’ on the computer screen in your doctor’s office.

Huib Kraaijeveld

Author of ‘Shifting the Lyme Paradigm‘, chairman of the On Lyme Foundation and member of the Global RBCC, an international consortium of nonprofit organisations, medical practitioners and science innovators dedicated to helping institutions recognize and respond to the pandemic of Borreliosis diseases, such as Lyme Disease.

(Nederlands) Categorieën

"This book perfectly describes the plight of millions of patients, who suffer from chronic Lyme Disease in many countries all over the world."Prof. Christian Perronne, France

"This book is a gift of truth and passion to humanity."Mia Morales, Lyme patient, USA

"I received the book exactly on the day that I had decided to end my life. Huh?! Yep. I am 35 years old years and have been ill for 19 years. Now I know why: Lyme. Everyone should read this book!"Miranda, the Netherlands

"This book offers a new practical, human centered way of dealing with health information. It is also ringing a bell for the new time how to work together towards health and thriving."Kim Schimmler, MD, Germany

"This pioneer's work made it perfectly clear that, when "i" becomes "we", even illness becomes wellness."Frans Vermeulen, journalist, the Netherlands

"In his crucial work on Lyme disease, dedicated social researcher Huib Kraaijeveld does not pretend to have all the answers, but guides us towards asking the upsetting and essential questions."Prof. Cees Hamelink, professor Communication Sciences & Human Rights, the Netherlands

"This book reads like a thriller! It touched me deeply and I am sure it will change the course of history."Linda Graanoogst, journalist, the Netherlands

"Well, I am wiping my eyes and blowing my nose, while tears stream down my face. I guess that is a good sign. You hit the nail on the head claiming that Lyme survivors need 'understanding'. I would like my own partner to read this book."Anodea Judith, PhD & author, USA

"What an awakening perspective! Huib has successfully set a quantum leap for understanding and managing Lyme disease by common people."John Wong, bestselling author, Singapore

"A true and unpretentious caretakers' guide to understand Lyme. This book will help you to completely understand what your friend is going through; regardless of the symptoms they have. I wish it had been written ten years ago, because it can actually save lives!"Cheryl Versalle, Lyme patient, USA

"This book actually speaks to people beyond its target audience (caretakers of people with Lyme Disease): people like me who are not travel companions, but to whom it is not hard at all to have or develop understanding and compassion. This makes the reach of this book bigger, much bigger if you’d ask me. I am amazed a book can do all of this!"Saskia Steur, business blogger, the Netherlands

"This book reads like an exciting novel, were it not that it concerns a deadly serious issue. It calls to contribute and take care of each other and our world. Read, weep, feel and act!"Manfred van Doorn, leadership expert, the Netherlands

"A creative and very intelligent vision to dive even deeper into the world of Lyme, to look at yourself, other people, but also the entire world around you."Friend of someone with Lyme

"The book indicates that Lyme disease can be a sexually transmitted disease. This will cause a tidal wave of awareness all over the world. Like the child in the old fairy tale The Emperor’s New Clothes, who exclaimed: 'But the emperor is wearing no clothes!'"Ola Aniel Petterson, STD campaign leader, Sweden

"What a brilliant sociological work! I am sure it will have much impact."Professor Neuropathy, Germany

"This book is a big eye opener. Both for friends of people with Lyme disease as well as for people with Lyme. Or for any other health issues, for that matter."Martin Möhrke, medical research leader, Europe

"I cannot read any other book for more than two minutes now, in this hell called Lyme. Yet yours I cannot stop reading! I should have put it away hours ago to clean the house. But I simply cannot stop."Ineke, wife of a husband with Lyme, the Netherlands

"This book is a delight to read. It offers soft candlelight and warm campfire camaraderie on an often dark and lonely journey."Laura Bruno, medical intuitive Lyme expert, USA

"A very honest and yet witty way of helping those with Lyme disease. This book is full of ideas on how to help your friend with Lyme, as a travel companion on this crazy journey called 'Lyme'."Lisa Hilton, Lyme advocate, USA

"Both the personal experiences as well as the author’s sharp mind turn this into an incredibly inspiring book that raises the consciousness of its readers."Kara, ex Crohn disease patient, the Netherlands

"Tempting, informative and eminently readable! Shifting the Lyme Paradigm is an absolute eye-opener for those who are not aware of what the journey of Lyme disease entails."Terri Mackinnon-Cross, CEO WorldLymeDay.com, Canada

"This book gave us the recognition and acknowledgment, which were like a band-aid on an open wound."Sara, Lyme patient, Belgium

"Very insistently written based on intensive, almost existential, personal experiences, this book also gives a clear overview of all relevant information for both patients and caretakers."Jan Eendebak, former chairman Lyme Foundation STZ, the Netherlands

"A relief to read, written by an expert who shares his dedication to his own path with us, and brilliantly written."Muna, mother of a daughter with chronic Lyme, the Netherlands

"This book made me realize that there is too little known behind the phenomenon Lyme. In a challenging manner the author provides understanding of Lyme disease and suggestions for tackling this disease. I have 'prescribed' this book to many of my patients and mostly astonishment was soon followed by recognition. An absolute must for anyone with (still) unexplained symptoms or the people close around them."Duco Kanij, osteopath, the Netherlands

"This book guides you through the labyrinth of Lyme swiftly, while it took us YEARS to even get this far."Eugenie van der Linden, ex-Lyme patient and therapist, the Netherlands

"This book is an absolute 'must read' for everyone! For patients, for family and friends, and for doctors who can finally learn that Lyme is more than what is written in their textbooks and that they should not be able to dismiss "unexplained" complaints as psychological too quickly!"Anne Fierlafijn, MD, Belgium

"Shifting the Paradigm of Lyme is not like any other book on Lyme that I have read. It appeals to a higher consciousness, and is analytical in an introspective way that is pleasant to read. This book is a friendly and warm reminder that no Lyme patient is ever alone."Thomas Grier, biologist, USA

"This book show how caring friends can intervene to provide succor and alliance ‘against the odds’ of a potentially serious and very complex illness that is still poorly understood by mankind."Kenneth Liegner, MD, USA